Submission 2108

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a person with disability who needs supports, but has so far been abandoned by local government, state government, and federal government. My situation represents the situation of the majority of people with a disability in Australia – we get no supports, regardless of how deeply our disability impacts our lives.

I do not support the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 passing in any way, shape, or form.

I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.

Parliamentary Scrutiny and Transparency

The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis says consultation should occur for a minimum of 30 days where possible.

The short timeline impacts me because I have an energy-limiting disability, which means my capacity to make a timely and full submission is impacted because, as a disabled person, I cannot perform to non-disabled timelines. It shows that this government is not literate on disability. That you cut the time for a submission for the most vulnerable of communities in Australia shows how performative this consultation is and how poorly this government views people with disability and our rights to a full life.

Recommendation:

Amend the consultation period for a best practice minimum of 30 days.

Key decisions left to ministerial instruments, not law

The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without

Submission 2108

going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.

How this affects participants: The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.

Decisions being made by a Minister with no qualifications or lived experience is paternalism and patronises people with a disability and tells me that the government views the needs of people with a disability as wants, which shows a fundamental misunderstanding of disability.

Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.

Existing participants face narrower criteria and fewer rights to challenge decisions

The issue: The Bill changes the rules for existing NDS participants and makes it harder to challenge some decisions about supports and funding. It also restricts when you can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their supports.

How this affects participants: This does not protect participants already on the NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced or their plan renewed automatically, they may have limited or no ability to challenge that decision. This could make it harder for people to get extra support when their circumstances or disability change.

When you remove the right of people with a disability to challenge a decision made about us, you mock the concept of nothing about us without us. Minister Butler had the audacity to use this quote when announcing the changes at the National Press Club, further demonstrating how out of touch this government is, and how lowly you view the needs of people with a disability. Most government departments in most democratic countries worldwide have a process where the decisions of the department can be reviewed. I would question to the government as to if it is even legal to remove this right from any government department. Even if you have a legal right to do this, do you have the

Submission 2108

ethical right to remove our right to review decisions? I argue that you do not, that removing rights is an undemocratic action that you are taking.

Recommendation: Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.

Unreviewable ministerial power to cut funding across all support categories

The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).

How this affects participants: A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.

All unviewable ministerial powers are undemocratic and unethical and paternalistic and I highly oppose these powers existing.

Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost items and require independent review rights before any funding reduction takes effect.

Requirement to exhaust treatment options before eligibility nThe issue: A person with disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will be removed (Schedule 1 Part 3).

How this affects participants: People with disability will need to prove their impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them.

Submission 2108

I cannot try all treatments for my condition because the Australian guidelines are over twenty years out of date and would require me to try harmful things which have been removed from guidelines in other countries. If I tried all things currently on our guidelines, I would highly likely go from being only housebound, to being bed bound and possible tube fed. I do not wish to decline in that manner and will not therefore “try” all things. You can also not require people to try all things when the government does not fund all things. If you require people to be rich enough for extensive private consultation, surgeries, treatments and so on, then you are saying that the NDIS is only for the wealthy, and that poor disabled Australians do not deserve support.

See more in the appendix.

Recommendation: Do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.

Unvalidated functional capacity assessment tool risks misidentifying need

The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.

The named assessment tool is the Instrument for Classification and Assessment of Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.

How this affects participants: If the assessment tool does not accurately capture the full extent of a person’s disability, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience.

ALL tools used by the government must include complex things such as Post Exertional Malaise (PEM). Because what you see of me for one hour while filling in a generic form is not representative of my life.

Submission 2108

Open tools such as I-CAN to questions and peer review. In my former job I asked to interview the researchers involved in making it and got redirected to the government. Why are you scared of questions? Are you hiding something?

Also in my former job Minister McAllister said that the government was working with disabled organisations to ensure I-CAN is accessible and includes things like breaks. And yet I’ve not seen one disability group reach out to its members to talk about what accessibility they need from I-CAN. Was the Minister lying? When will these consultations take place? Will it be genuine consultation, or performative consultation like for this bill?

Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.

Supports cut before replacement system is ready The issue: From 1 October 2026, the government has announced funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.

How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.

If you cut a category of support so that a person currently on the NDIS cannot get help to access medical appointments, how will they meet your new requirements of “try everything” needed to stay on the scheme? Shall we teleport to appointments? This cut is cruelty and a callback to ugly law days.

Recommendation: Require that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports. Furthermore, ensure that Foundational Support are more than an informational website (general foundational supports) or a generic in person group session (targeted foundational supports). People who are not on the NDIS still need ONGOING INDIVIDUAL SUPPORTS.

Submission 2108

Communication Crisis / “not contactable” rules

We are not staffers in government. We are not available 24/7. Plenty of disabilities mean we cannot communicate at will. I already hear from people on the NDS that you completely ignore communication needs and treat them as wants. This is already showing the governments lack of literacy in communication with people with a disability.

To add the thread of cutting people off to your already inappropriate processes is nothing more than pure cruelty for the sake of making your precious budget look better.

Administrative burden

We are not unpaid workers. Provide skilled paid staff to negotiate the way through your messy disorganised, badly run department on our behalf. Or listen to what people told you in Estimates last year, which was that if you want to improve the NDIS/NDIA, actually follow your own rules and policy and procedure. That would help us a lot.

Automated decision-making

Is a scourge on the planet and doing this while cutting off the ability to review or appeal or otherwise fight back is another unethical action on behalf of this government.

I ask the committee to consider my lived experience when reviewing this Bill. I ask the committee to respect lived experience as more valuable than a political wish to save money. We are not your budget line items. We are humans with lives and rights.

Submission 2108

Appendix: Posts I have written in the past that explain more of my viewpoints on government actions, including how they are relevant to this Bill and this submission.

Stop shuffling, start designing

Relevancy: The intersection of NDIS and Foundational Supports

NDIS and foundational supports come up a lot in my life, mainly due to my job. And I’m kind of sick of it. Not only is life under the NDIS only a reality for a small percentage of people with a disability, I feel like we’re rapidly losing the opportunity for foundational supports to be an actual useful service.

The focus at the moment seems to be on shuffling, not designing.

What do I mean? Foundational supports sessions seem to be focusing on budget shuffling. Eg the one I attended was effectively all about kicking ND kids off of NDIS and onto foundational supports – shuffling the budget expense from federal to state.

What about all the people who need disability supports right now and can’t get NDIS? Because that’s actually most of us. My fear is that the shuffling will end up with no positive outcome for those of us not currently within a system. That the shuffling of (eg) ND kids from federal to state will use up how the states are willing to include people and then when the rest of get the lung capacity to scream “what about us”, the state will say it’s too hard/expensive/whatever other convenient political excuse they pull out of their butts.

The other bureaucratic roadblock I can foresee is around permanent and severe. The state will tell you that you have a permanent and severe disability, and therefore need the NDIS. The NDIS, as we all see in the community, refuses to see things (eg MECFS) as permanent and serious. I wonder how many of us will be caught in this argument.

All for the shuffling of some f&*@ing money.

Submission 2108

I don’t know about other people but I don’t give a flying f%^k which bucket of money my supports come from, and if they’re called NDIS or something else. I just need the f%^king support. Actual support, not capacity building or peer support or self advocacy or other faux half-solutions.

I need someone to do the things that I cannot do.

I’m still recovering from the flu and pretty weak, so I hope these words from my clogged up brain make sense.

Original post: https://normalness.com/2025/07/24/stop-shuffling-start-designing/

The state will take care of that

Relevancy: You assuming the states will take care of us when you reduce the number of people on the NDIS.

The problem is, the state won’t.

You’ve seen the issues I’ve had trying to get non NDIS supports. Others I know have been told even more ridiculous things by the same supposed support services.

The problem with the shuffling that’s not going on to save the federal government money is that there’s an assumption that the state healthcare systems are comprehensive.

They are not.

If you’ve ever looked at referral criteria for a specialist in your health district, you’ll have seen things like “{district} does not treat {condition}”. This is very, very common. It means that many people with mysterious* chronic conditions don’t get any medical treatment.

Did you know that your state health system can say “nah, I don’t like that condition, no treatment for you”?

Then your health gets abandoned unless you’re independently wealthy enough to see multiple private specialists. And even if you are independently wealthy, you may still not receive care if you’re house or bed bound.

Submission 2108

*mysterious does not mean that the conditions are not real, not treatable etc. It usually means they are medically maligned due to old fashioned opinions that have not kept pace with science.

Side note: this same issue exists when people want to fund only “evidence based” treatments – what about people with a condition where due to a few rich upper class f^&ks (pwME know who I’m referring to), research has stagnated for decades? This is what people mean when we say science is not neutral, science is political.

So… if the NDIS won’t take chronic illness because they think chronic illnesses aren’t disabling, and the state has never let you even see a specialist for your chronic illness… where the f%^k will our supports come from?

If the answer is “no supports” then there are big problems coming.

The only safe and inclusive way forwards is if the pending funding agreements between federal and states for aged, disability, and health care includes that states have to treat every condition, that exclusions are no longer permissible.

The Try Tank

Relevancy: expecting us to try all treatments. Expecting us to be perfect. Expecting us to be unpaid staffers working for the government in how we communicate with you.

With a chronic and unpredictable body, there are times that I say to people, “My try tank is empty”.“

I feel that the combination of wellness culture, toxic positivity, and inspirational disabled people means that the effort it takes to trudge through sludge of chronic illness is not something very well understood.

Or perhaps it’s not even at the point of understanding yet, as it still lacks respect.

The thing is, there’s a pressure that I’ve felt (and I assume others with disabilities and/or chronic health conditions have felt this also), and the pressure comes from all sides.

Submission 2108

Your medical team expects you to be on top of everything. Your physiotherapist expects you to do your stretches and exercises perfectly every day. Your GP may lose interest in you if you don’t get better. You never know when a whim of anti-chronic health issues in medicine will cut off medications because you didn’t heal. Your psychologist thinks you’ll be self-aware at all times, using tools and techniques to stay perfectly happy.

And that’s if you’re lucky enough to find and access a medical team.

On the next level of “if you’re lucky enough” comes employment. Make sure you don’t have flares at work. Get appointments outside of working hours. Yes, even the ones in the public health system that you have no control over. Try not to have sick days for chronic things because you’ll use them up and have none for when the next acute bug sweeps through the office. Plus, try to plan your flares away from your annual leave, because really, you’re being greedy and having too much time off. Don’t have a bad pain week when your tolerance for everything, but especially bureaucracy, has worn you down.

I am sure that everyone has a variant of the Try Tank. I don’t believe in competition of “who has it worst” or “be thankful, someone else has it worse than you” (ok but I don’t want anyone to have things worse than me). What empties my Try Tank may be a blip in your day.

Pre-Budget Email

Relevancy: Government behaviours towards disabled people

Context: written before Butler’s speech at the National Press Club

Today I was reading the news when I saw politicians claim the federal budget isn’t set in stone yet. So I figured, why not email a relevant minister and tell them what I’m expecting. How their behaviour hasn’t been up to standard recently.

It’s not my best work, because the past month has been a lot in my personal life, but advocacy doesn’t have to be perfect. Just do some of it (if it’s within your capacity). Feel free to use my letter as a template. Maybe you’ll remember an angle I’ve forgotten to include. Who knows who reads this stuff, but whatever, I’ve tried. That’s all we can do.

minister.butler@health.gov.au

Submission 2108

Dear Minister Butler,

I am concerned about the level of negative rhetoric that the government is promoting about disabled people, and potential cuts to disability support in the upcoming budget.

Given that it is your portfolio, you should know that overall, it is only a small percentage of disabled people in Australia who have access to the NDIS. If anything, the NDIS should be being expanded to ensure that all people with a disability have access to equitable supports.

The system does not support everyone. Many of us are non NDIS users not because the system claims we are not disabled, or we’re not the right type of disabled. Generally, being not the right type means our disability comes from a “health condition”, as for some reason, your government deems these non disabling. These are also conditions which are primarily faced by women, and are under-researched. Neither of these factors should exclude us from supports, and yet they do.

Language recently used by the ABC also seems to uncritically reflect government stances. In a recent article titled “Australia’s ‘lucky country’ mantle has slipped — and we’re not happy about it” they say that one of your preferred research firms “found the NDIS was the government spending program seen by Australians as producing the least value for money for Australian taxpayers”. My question is – why does the opinion of the presumably mostly non-disabled surveyed matter more to you than the opinion of the disabled? Most Australians are not literate on the complexities of living with a disability, so their opinion on what is value cannot be … valuable.

Again, as you should know given your portfolio, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability showed that one of the biggest barriers to inclusion and rights in Australia is the attitude of non disabled people. Yet here you are, having surveyed what was likely primarily non disabled people, and you are placing their uninformed opinions of higher value than that of lived experience.

You have an opportunity this week to show that, as a public servant, you are able to represent and support people with a disability. I hope that your National Press Club speech this week is full of support for the needs of disabled people in Australia.

I hope that the budget is being created without increasing hate for disabled people, but with the knowledge that both NDIS and Foundational Supports need to be wide reaching program that truly support people with a disability.

I look forward to seeing less hateful rhetoric on disabled people coming from this government, and a budget that respects our human rights to access support and society.

Submission 2108

Original post: https://normalness.com/2026/04/20/advocacy-pre-budget-email/

Why means testing disability support is a bad idea

Relevancy: for when you next have a bad idea to save money

Recently in the news, a person suggested means testing disability supports. This is a bad idea, and I’m going to share some of the reasons why in this post. Feel free to add your own in the comments.

Costs

Disability is expensive. It costs us more to live. If you are going to means test disability supports, then we can’t be judged by non disabled needs. Research shows we need 50%-102% more income than non disabled people.

If disabled people were means tested based on something existing (eg centrelink income tests) we’d be further in poverty than a non disabled person subjected to the same income limits.

Working

Not every disabled person can work. Not every disabled person who works should keep working. We are often limited by ableist employers to entry level jobs. Recruiters and prospective employers run away from disabled people once they find out we’re disabled.

Employers won’t accept that they need to increase their skills relating to disability. We’re expected to consult for free, where other types of consultants get paid. Once someone finds out we’re disabled, they assume we can only work with other disabled people.

If possible, we generally have to hide being disabled to get employed. Accomodations are often denied to us, because it’s a non disabled person with no literacy around disability deciding what is “reasonable”.

Submission 2108

Disability supports often help people access work for the first time in their lives, nearly every quarterly report from the NDIS that I’ve read has had a case study on this. We’re seen as an economic burden if we don’t work, but also somehow an economic burden if we need supports to work.

We’re told to work for ourselves so that employers don’t have to be concerned with accomodating us. Employers need to be inclusive, not just appear to be inclusive.

Ageism

The NDIS does not permit people over the age of 65 on the scheme. The government incorrectly assumes disability and aged care are interchangeable. The government is removing some kids from the NDIS.

Who is next? Disability needs do not correlate with age. Age being a variable is unethical. How will family income impact eligibility? Do parents have to give up jobs to support their kids? Will kids be expecting to pay for retired parents? Who will be considered family? What income will be considered “for the dependent”?

Is it possible though?

Means testing disability support could be possible. We have a lot of things to fix first. Every link, every thought above… those are all barriers to means testing.

We need things such as healthcare systems that can’t refuse to treat conditions they don’t like. We need support systems which focus on an individuals needs, not a predetermined set of services. We need disability support services to admit they’re for people with a disability. We need to remove the idea that disabled people have to be palatable, that we have to make non disabled people comfortable, to get supports.

We need to stop expecting disabled people to have endless resilience in the face of discrimination and bureaucracy. We need something akin to a Universal Basic Income (UBI) to reduce bureaucracy and to ensure the financial safety of people who cannot work.

We need discrimination and ableism to not exist, we need true equity, in order to means test disability supports. A LOT of steps need to be taken to have true equity.

Submission 2108

Means testing disability right now is putting the cart before the horse. And when that happens in the disability sector, disabled people die. This is not hyperbole, this is the reality we face.

Just think, all the links in this post are purely things I have come across in my life. This is one persons experience. These are only the experiences I have put online! What I share online is a very very small fraction of what I experience. Disability is diverse and I can only imagine how many other arguments could be raised from a collection of others experiences and perspectives on disability and disability supports.

Original post: https://normalness.com/2026/04/11/why-means-testing-disability-support-is-a-bad- idea/

Foundational support via Emerge

Relevancy: please listen to patients and organisations about what we actually need from the foundational supports that you haven’t created yet

In late 2024 a few organisations were doing surveys regarding the creation of foundational supports. As someone who needs supports but presently gets no supports, I filled in as many as I could. I found my words in one particular report (this one).

When I first read the report, I got really excited because I thought “OMG someone is saying exactly what I think!” and then I realised that person was me (the report doesn’t cite names which is fine).

I was quoted in the executive summary:

“I feel like lots of gov[ernment] disability is based on intellectual disability e.g. face to face, build skills slowly. And that may be ideal for that cohort. But I feel like we’re all being forced into that model and that does not represent my needs.”

I know this one was me because it was late and I was too tired to type out the entire word government.

I really didn’t (still don’t) feel comfortable with saying these words because while I don’t see any condition as better or worse or more deserving or less deserving (your needs are your needs, it’s a neutral thing to me), too many people might read it as a comparison thing; but I also felt like the example really highlighted the situation. I did run it past a friend after who said there’s a difference between a “who has it worse” approach and pointing out that a disability services designed for one

Submission 2108

need won’t suit every need. I hope people appreciate that the latter is the spirit in which I wrote that statement. I think I’d find a way to reword it in the future because the risk of misinterpretation makes me uncomfortable, but those are the words/example my brain came up with late at night when I was doing the survey.

It was only while doing this survey that I realised how much I hated being forced into a capacity building approach, something reflected in the executive summary: “Many respondents also disagreed with the government’s focus on individual capacity building.”

To be honest I can’t remember if the next one one is me or if I just said something very similar. Either way I’m highlighting it here because non-disabled people telling us what we must desire pisses me off. Socialising is incredibly difficult to the point of impossible for me, so the mere concept of forcing it on me when it makes me crash is dangerous:

“Any attempt to build my capacity tends to result in backwards steps. Participation in the community (as much as it seems a desirable thing) is always detrimental to my functioning.”

This one was definitely me (though many others probably said a near identical thing):

“I don’t need to be taught how to do things. I need someone to do them for me.”

And I like the way the report puts it: “For many, the focus on skill-building was seen as inappropriate, as it assumes a skill-deficit which they don’t have.”

A general important point which is largely ignored by both the healthcare system and most organisations: “This includes implementation of COVID-safe practices, particularly in healthcare settings, to ensure individuals with compromised health or severe symptoms can access care while minimising additional risks.”

I don’t know why governments seem unwilling to understand that disabilities have disabled people. That if you want to increase the capacity of people with energy limiting conditions, maybe don’t have a peak body (RACGP) who basically call us crazy, and instead, invest in some actual research for our condition.

Original post: https://normalness.com/2026/01/12/advocacy-foundational-support-via-emerge/

Submission 2108

My 2023 submission to the long covid inquiry Relevance: if you want us to try everything before accessing the NDIS you need to fix the associated problems with the health system to support us to try everything.

My suggestions are still largely the same in 2025 as they are addressing systemic issues that need changing. At the time I submitted it anonymously (number 185) as I was still very much hiding my needs from the world.

My submission

Specific problems and actions the government could take

Costs

It is a morally wrong issue with medical billing in Australia that patients have to have the full amount of cash up front for appointments. Even if the “gap” is “small” (there is far too much privilege in commentary about what a small gap means and I have concerns about affordability in this area if I end up unemployed and on welfare).

As an example: Under a chronic health management plan I have to have the full amount in my bank account to pay for physiotherapy. If I use my extras coverage I only need to have the gap cost. Why can a private business afford this gap only cash flow but not the government? It is totally back to front.

Suggested Action: as soon as possible, change the burden of costs so that patients have to have ONLY any “gap” amount in their bank account.

Access – Medicine

I am lucky to have a compounding chemist within a few kilometres of my home as one of my “standard” long covid medications can only be accessed at a compounding store.

This is a new development, previously when my husband (who doesn’t drive) had a compounded medicine I had to leave work early and drive to the back end of an industrial area to collect the medicine within limited opening hours. If that location was still my nearest compounding chemist I would not be able to access my compounded medicine as the drive would result in an increase of PEM symptoms for a few weeks after each trip.

Suggestion Action: ensure accessibility of all kinds of medicine to the population.

Access – Physically accessing Medical Care

Submission 2108

Through the long covid Facebook group I have become aware of official (public) and unofficial (private) long covid clinics around Brisbane. I cannot access any as they are too far away for me and travel more than a few minutes leaves me a two week long flare.

Public transport is often not suitable for factors such as:

• Walking distance from home to nearest mode, walking from end stop to actual destination.

• Unreliable services risking appointment being missed.

• Extends the duration of time away from home which can worsen symptoms and extend PEM.

• Lack of mask requirement leading to unacceptable risk of further covid exposure.

Suggestion Action: Pay for cab (or other private) transportation to and from medical treatments for long covid patients. Do not use a reimbursement system and call this payment as reimbursement methods are impractical for lower incomes.

Access – Relevancy of Medical care

I am aware that at least one of the private long covid clinics in the Brisbane area seems to only treat the cardiac and respiratory type of long covid symptoms (possibly with the inclusion of the POTS symptom range too). I feel (though have not had the energy to clarify) that this is the case in other states. I do not have those types of symptoms so even if there was a long covid clinic in my medical catchment, it would likely provide me no support.

Suggestion Action: Include ALL symptoms of long covid in long covid clinics. Ensure that access includes telehealth and home visits for those who are housebound.

Access – Accuracy of Medical Care

Due medical bodies in Australia failing to update guidelines that remove Cognitive Behavioural Therapy and Graded Exercise Therapy due to the studies being flawed and dangerous for ME/CFS patients, I am at risk every time I see a practitioner that they will “prescribe” out of date and harmful treatments.

Suggested Action: Immediate update of guidelines to reflect accurate and current information, removing GET and CBT, and a high quality educational campaign regarding this removal for medical and allied health staff.

Access – Government payments

Submission 2108

Permit people to access non poverty levels of government payments. It is emerging that radical (complete) rest can be a powerful method of combatting long covid and this is impossible if you have to work.

Suggested action 1: Ensure temporary and non stabilised illnesses are permitted for DSP access. Long covid is a new and evolving condition, old rules do not suit and will only continue to be a source of harm.

Suggested action 2: Remove partner income tests as these limit mobility for leaving partners.

Suggested action 3: Raise the payments to at least the Henderson line so that people do not live in poverty as this will not assist with any health condition.

Access – Indoor spaces

I would like to be able to return to an office workplace one day but do not want to catch every virus that flies through.

Suggested action: legislate air quality standards to lessen exposure risks in indoor environments.

Access – antivirals

There is a disconnect between who was a priority for vaccinations in the initial rollout and who can access antivirals. How can one person be so high risk that they were eligible for early vaccination but not high risk enough for antivirals?

Suggested action: where not contraindicated, allow long covid patients to access antiviral medications for subsequent infections.

Access – Work

My career opportunities have now been limited by the fact I am mostly housebound. I cannot commute and with companies viewing work from home as a treat or something equally frivolous instead of a critical accessibility requirement, I am limited for the foreseeable future about what jobs I can apply for. I have already had to take a step “back” in order to get a work from home job so I can keep a roof over my head. I am at risk of homelessness and suffering from a lack of career opportunities because the government decided it was ok to let a horrible virus rip through the community.

Submission 2108

Suggested Action 1:

Ensure accessibility for disabled staff is not lip service. Enforce laws. Review laws if needed.

Suggested Action 2:

Change the unwritten faux morality culture of workplaces that work has to be done at a desk (or a standing desk). People who need bed rest can still work and shouldn’t have to hide this or miss out on opportunities because of it.

Access – Safe Healthcare

I caught covid in an emergency department because the only space to sit turned out to be near the covid positive patients. At no time did staff tell us they had separated covid positive and non-covid patients. Their neglect on some basic logistics that didn’t require medical skills, just some common sense, means I am now suffering.

Suggested action:

Require measures such as ventilation standards and high quality masks so that at risk people do not have to risk a first or subsequent infection in order to continue to access healthcare.

Systemic Issues

Many of the items I have brought up here are my experience from long covid but they are also systemic issues that others with chronic health conditions and/or disabilities experience.

Suggested Action 1:

Respect the energy (physical, mental, and emotional) that it takes to submit information to an inquiry such as this. Remove the ridiculous requirement that the submission must not be published somewhere else and must be unique to this submission. You do not own patient stories and claiming we cannot share them is rubbish. I will share my story where I please. Patient stories are everywhere and bureaucratic processes such as this need to adapt to those who are submitting, not to the whims of a fully abled public servant who doesn’t understand how difficult this is.

Suggested Action 2:

Paying for patient time with appropriate consulting fees. Chronically ill and disabled people have amazing lived experience which is valuable in getting to the real source of issues. Many of us also have underutilised skills due to inaccessible workplaces and with an accessible work environment can contribute to improving government services. We are not charity cases and should not be expected to want to constantly give our knowledge and experience for free.

Targeted Foundational Supports Advocacy

Relevancy: You’re kicking people off the NDIS when other systems don’t exist yet. How you have missed an opportunity to properly support the health system in your agreements with the states.

Submission 2108

I recently became concerned about plans for Targeted Foundational Supports. This is not a new concern (I’ve outlined things in the past), just a more specific one.

This concern was mainly raised through the application form for this focus group, because I read this as implying that Targeted Foundational Supports may be ONLY Thriving Kids.

Image description: a yellow box with text reading: The focus groups are going to be talking about two different topics. Please select which topic you would like to focus on, if you are selected. You can select more than one: General foundational supports - supports for people with disability outside of the NDIS. Targeted foundational supports - supports for children and families with disability outside of the NDIS.

If you’re a person with a disability who receives no supports, like me (despite my efforts and efforts), and you know how few disabled people in Australia actually get NDIS (not a large number), then

Submission 2108

you’ll understand why I’m getting concerned. I need supports. Targeted supports are pretty much the only hope I have left.

I emailed the people running the focus group. I applied to be on both groups because while I don’t general supports will be of value to me, if targeted supports are going to be only Thriving Kids, then that’s of zero use to me. More importantly, others who are directly impacted by/who will use that service should be part of that focus group (unlike what happened with QLD consultation). I asked the focus group organisation if the government has changed the scope of targeted supports. That was about ten days ago as I write this. I never heard back.

So I collected this information, my concerns, tried to fight the brain fog, the fatigue and headache from painsomnia, the stress I’m under right now due to the hospital requesting unsafe tests that also have challenging accessibility, and I sent it to two organisations who have a focus on systemic advocacy. I hope what I wrote to the orgs makes sense. I hope this post makes sense. But if it doesn’t, oh well, this is the best I can do right now with the capacity I have.

The main thing for me is that right now, when the states and federal have not agreed on hospital and disability funding, we have a window… you see, if targeted supports are going to be ONLY Thriving Kids, and if we don’t really know this formally, “out loud”, then the budgets states receive will be set to only cover Thriving Kids. We should use this window of not-yet-agreed funding to make sure that targeted supports will be more than just Thriving Kids, because I think it’d be easier to fix this situation now rather than beg for scraps later.

I’d love to be completely in the wrong about this and feel confident that Thriving Kids is just an initial focus, and that Targeted Supports will help the tons of people like me who are currently abandoned by both NDIS and state governments.

I really do mean it when I say I want to be wrong, by the way. That is not hyperbole. I’m happy to be wrong. I’d be f%^king delighted to be wrong, in fact. But my faith in supports has been ruined over the past few years of survival and I’d rather be wrong than silent and correct, and miss an opportunity to raise something before it becomes a problem.

Original post: https://normalness.com/2025/12/02/targeted-foundational-supports-advocacy/

Tips on codesign for organisations

Relevancy: everything you’re doing wrong right now with the consultation for this Bill.

Submission 2108

As you know, I have thoughts and feelings on codesign. But I came across this research by DANA and thought I’d share the points that felt most important. Important to me basically means the points that I’ve seen disability organisations fail continually to do, or do well. Most of my feelings are organistion -> individual based, and the focus of this was organisational. That is to say, it doesn’t cover things like paying individuals, only organisations. But given that’s their audience, it makes sense.

Below, the italics are my thoughts and the quotes are (you guessed it) quotes from the research paper linked above. Subheadings are also directly from the research paper.

Allowing for non-ableist forms of expression.

“Traditional forms of research can feel limiting in terms of how people with disability prefer to communicate. Co-designing methodologies must begin with recognising diverse communication methods are valid, central ways of sharing knowledge, not deviations from the ‘norm’. A key issue here is that researchers may take for granted communication preferences that are deeply ingrained in research methods such as interviews and working group, that rely on verbal and or written communication.”

This is a huge one for me, especially with organisations who demand time consuming sessions and reject asynchronous communication. I can’t help but feel that organisations who demand able bodied communication only want the most performative and palatable disabled people to be included.

Closing the loop: Sharing the benefits of research.

“A key issue raised among community partners, including our First Nations community partners is the burden on people with disabilities to repeatedly share personal and sometimes traumatic experiences without clear pathways for how their insights will be used or whether they will drive change.”

I know I’m not the only one (and I know this doesn’t only apply to disability work but also poverty work) but being asked to relive bad experiences is common. We have to keep reliving things to make complaints to get change (which often fails due to power and money differentials), and then organisations also want to know these details. At what cost? (All types of cost.)

Distribution of resources: Time, money, data.

“While it is now commonplace for research partners to offer renumeration for research participation, these agreements often impose ableist expectations in terms of time and resources. Specifically, people with disability are often expected to produce and participate in research at the same pace as non-disabled researchers, and often with less (financial and informational) resources.”

Reasonable accommodations or adjustments need to be applied in these situations as well.

Submission 2108

Sharing data: A mutual exchange

“Many community partners expressed frustration with research that takes years to publish, which is when the opportunity to use research to influence policy on systemic issues has passed.”

Another one that I’ve found lacking; once it was offered that I could read a paper later, as if that was the same as contributing to it. Nope, reading a paper later is NOT contributing and having my voice heard!

Original post: https://normalness.com/2025/11/07/tips-on-codesign-for-organisations/

NDIS support needs assessment process feedback survey Relevancy: Relates to the elements of the Bill which are plan creation and assessing/reassessing disability.

Do you have concerns about the creation of a new NDIS support needs assessment process? Please provide details.

I am concerned the assessment process will not be made by, run by etc people who understand what it is like to live with disability. For example, I’m concerned about people who are not literate in disability deciding we can just try harder, when we can’t. Or that our needs are wants, because they don’t understand what makes them a need.

Do you have concerns about the introduction of a support needs assessment tool based on the I-CAN assessment tool? (tick one) If yes, please provide details.

I am concerned the tool is too much boxing us into presets, that it has not yet been adapted and tested rigorously for use in disability context, that in particular the first users subjected to it will be getting an inappropriate assessment, that the tool will not be inclusive of fluctuating disabling chronic illnesses.

How can the NDIA ensure the new support needs assessment process is fair for people with disability? Please provide details.

The same way the NDIA need to fix nearly every aspect of their operations – ensure disability literacy is at the center of their decision making.

Do you think the new assessment process should let you continue to collect evidence and supply your own reports? (tick one) If yes, please provide details.

I am concerned about the cost of funding such reports (in my case the most knowledgeable practitioners in Australia have a policy of not writing reports, which leaves me up a particular creek without a paddle), I am concerned that even if people submit the reports, they won’t be read, won’t

Submission 2108

be respected, will be seen as biased, or will otherwise be prioritised lower in the information hierarchy when used to make decisions. Reform of the public health system needs to be included for equitable access to skilled medical professionals.

What needs to be included in the new support needs assessment process to ensure it captures the diversity of people’s support needs. Please provide details.

The problem I have with details being included is that there is a preference for evidence based support. While on the surface this is admirable, there is a problem because the government assumes evidence exists.

For marginalised and underfunded and historically neglected conditions such as MECFS, we don’t have the type of solid evidence base that other conditions have due to the pressures inflicted on the research due to a few select people psychologizing the condition.

I don’t know what the solution is, but this gap in being able to meet standards of evidence needs to be managed and acknowledged because expecting individuals to overcome systemic and historical biases is not reasonable.

Trust disabled people to know their needs when there is a gap in evidenced based suggestions, maybe?

What should the next stage of the support needs assessment process co-design look like as it is created and the assessment tool is customised for the NDIS? Please provide details. Co-design is when people work together to plan something new and can include things like testing with different people, surveys, feedback forms, interviews and focus groups.

I don’t mind what it looks like so long as it incorporates all communication needs. I do mind if they ask and ignore us, and personally feel government should be invoiced by disabled people when they ask us for this information and then ignore it, because I’m tired of the consultation being fake.

Do you have any more feedback or ideas on what would you want the support needs assessment process to look like for you? Please provide details.

The assessment needs to include people who can’t communicate, who can only do asynchronous communication, who need a support worker or AAC or anything/one else to communicate for them. It needs to include people who may only be able to speak for a few minutes a day and need days of breaks in-between questions.

Any other comments on NDIS support needs assessments?

Submission 2108

I support reducing the financial burden of paperwork. I do not support putting people with a disability into predetermined and presently unvalidated boxes.

Original post: https://normalness.com/2025/10/24/ndis-support-needs-assessment-process-feedback-survey/

If we’re a “burden” why won’t you help us?

Relevancy: cutting NDIS supports won’t help us, and if you don’t care about us as humans, it won’t help the economy.

Recently an article was published by ABC news about how chronic health conditions are impacting productivity. Naturally the word burden was use multiple times in the article. I assume this is an economic framing that relies on a charity and/or medical model approach to disability.

But the biggest problem I have with this article is what I shared on social media at the time it came out. The glaring gap.

There was NOT ONE mention of giving supports (including financial) for people with temporary or permanent health conditions.

Health conditions are often disabling. We deserve support.

I’m so tired of the divide between “disabled” and “disabling chronic illness” that the government enforces. If you’re disabled and need support that’s all that should matter.

I’m burnt out at the moment (have been for months) because I’m ignored and unsupported and dismissed… all because it’s a chronic illness that disables me?

It’s f&*king ridiculous.

If we’re a “burden” and dragging the productivity of the country down, why won’t you help us?

Original post: https://normalness.com/2025/08/17/if-were-a-burden-why-wont-you-help-us/

Submission 2108

Is there still an opportunity to do foundational supports well?

Relevancy: You can make this not a disaster if you listen to disabled people.

Recently in an interview for work I said “this can all be summed up by saying there’s still an opportunity for foundational supports to be an amazing service for Australians with a disability” (audio version here, version with transcript here).

And to be fair to myself, that is technically true.

When they haven’t been designed yet, it means there’s still a chance to design them well.

But that doesn’t mean I think governments are actually planning to do a good job.

After yesterday, I feel like that fear of foundational supports being done poorly is quite real.

I mean, the codesign team (they mentioned something like 50 people were selected) had to meet in person for something. Training maybe? To be honest, I don’t care what it was for – a codesign system that requires meeting in person is automatically excluding people who are housebound, or people who don’t have the right supports to travel, or having caring obligations that don’t permit tavel. Lots of reasons travel is inaccessible and yet this “significant reform” (their words not mine) is requiring an exclusionary activity. So yeah, fears that only disabled people who are somewhat palatable and able to perform able bodied get included are being confirmed.

I’d like to know if anyone on that team has an energy limiting condition, because I’m very sick of being told my needs are wrong by service providers. We would have a better chance of avoiding being told that if we were included in service design.

86% of Australians with a disability do not have NDIS. Very few people have NDIS. And yet that’s the only thing that gets talked about or that exists for support. You can see that here when the state government refused to help me and told me to go away and bother the NDIS.

Submission 2108

Why am I concerned?

Because there’s an increase in rhetoric that I’m finding difficult to stomach. The rhetoric is that those who REALLY need the NDIS have it; “The irony is that the very characteristics of these people mean that they don’t require either the depth, or length, of assistance over a longer period” (source).

The NDIS review website says that targeted foundational supports are “for people with lower level support needs who are not eligible for the NDIS”.

Unfortunately, many of us do need “depth and length of assistance”, or are not “lower support needs” AND don’t have access to the NDIS.

I’m worried that needs of people with ME will be ignored and we will be forced to use inappropriate services. I’m worried that disabling chronic health needs, which are a huge part of the community, will be ignored. I’m worried that the diversity of needs within the same condition won’t be respected.

The information and the community is all here, ready to make a good system. I don’t think the government is listening. And I don’t think the government wants to listen.

The problem I see is that the government adheres to a social model of disability, which assumes that once barriers are removed, we’re fixed.

Unfortunately, removing barriers in society doesn’t remove disability for everyone. It absolutely can help, removing barriers always helps, but it doesn’t mean we’re now non disabled.

And when the government decides removing a barrier is all they need to do, they’re creating a support gap that wouldn’t exist if they listened to the community they claim to be consulting with.

So, is there still an opportunity to do foundational supports well?

Yes. There is an opportunity. I just don’t think the political will exists, which is critical to success.

Original post: https://normalness.com/2025/06/05/is-there-still-an-opportunity-to-do-foundational- supports-well/

Submission 2108

My needs are not wrong, your service is wrong

Relevancy: Stop telling disabled people what they need and listen to them. Disabled people are the experts on our lives, not bureaucrats.

I was doing some prep reading for an interview at my job this week (you can listen to it here or the version with transcript here) on foundational supports and it had me reflecting on my attempts (in 2024, in 2025, and the complaint and the response to the complaint) about trying to get some kind of freaking supports for my life as a disabled person.

A concept clicked in my head and came out as the phrase “my needs are not wrong, your service is wrong”.

And that’s exactly what happens when services for people with a disability are created without people with a disability being involved. This is what happens when people in power don’t listen to needs and think they can take a top-down approach and tell us what our needs are.

When foundational supports are being discussed I am seeing red flags. One: they are assuming that people not currently in ndis have lower needs (eg not much or no 1:1 care needed). Two: that people who really do need specific care can get it via ndis (given very few Australians with disability get ndis, this is an awful assumption). These red flags are only that – warning signs. This is because not enough is known about what will actually be included in foundational supports.

Original post: https://normalness.com/2025/05/15/my-needs-are-not-wrong-your-service-is-wrong/

The disability service isn’t for disabilities Relevancy: what happens when you ask a state for support right now – you know, the exact time you’re planning to kick people off the NDIS when no alternatives exist

Yeah that sounds like a really sh*tty ridiculous headline, doesn’t it? I wrote about trying to get some disability services in early 2025 and how I’d lodged a complaint. Well, here’s the follow up to that. Maybe take some blood pressure medication before reading.

My complaint:

To Whom It May Concern,

Submission 2108

I wish to make a complaint about the inappropriate nature of services offered under the Queensland Community Support Scheme.

Please firstly note that this is NOT a complaint about any staff I have interacted with. They have all been lovely, professional, understanding, and should in fact be commended for the compassion with which they do a difficult job.

This is a complaint about a government body deciding what services are appropriate for a disabled person.

My most urgent need is a mowing service. I cannot mow a lawn due to my disabilities and I will never be able to mow a lawn. I was informed that the Queensland Community Support Scheme does not offer a lawn mowing service anymore. The most I could get is someone to mow a few strips for access, for example to the bins, mailbox, or washing line.

This would not suit me as I would breach my lease, local council expectations etc by having an unmown lawn.

It was explained to me that their services take a capacity building approach. While I understand this is common in disability sectors, I cannot capacity build myself into mowing, that is not how my disabilities work.

I do not need someone to teach me how to mow, I need someone to mow for me.

A disability service needs to listen to the needs of the disabled person, not dictate to them what they can or cannot do.

This needs to be corrected and I would welcome a response on how you plan to listen to and support disabled people with what we actually need.

Please note that due to my disabilities, I require email contact, not phone calls or meetings etc.

Kind regards,

Vanessa Smith

Submission 2108

The QLD Government response:

Dear Ms Smith

Thank you for your communication regarding the Queensland Community Support Scheme.

QCSS is a universal scheme and is not structured to deliver specialist disability or health supports. The following is provided for your information and it may be that other support, such as that offered through the NDIS, may be more suitable.

Queensland Community Support Scheme

• The Queensland Community Support Scheme (QCSS) is part of the Queensland Government’s ongoing commitment to enabling economic participation, supporting thriving communities, and reducing social isolation for Queenslanders.

• QCSS forms a part of the broader human and social services system and supports delivered are designed to work in conjunction with these other mainstream and targeted supports and systems.

• QCSS provides low intensity supports to assist people to increase independence, develop skills, and enable people to live in their community.

• Supports include but are not limited to essential yard maintenance to ensure safety in access and mobility around the external environment of the home. Essential yard maintenance is defined as mowing to ensure safety in access and mobility around the external environment of the home.

• The QCSS is not intended to meet all aspects of a person’s care requirements or to duplicate supports and services that are available through other formal and informal support mechanisms, such as the NDIS. QCSS offers universal access to all Queenslanders and is not specifically a disability service.

National Disability Insurance Scheme

• Your email indicates that you have a disability, and the department encourages you to test your eligibility for the NDIS.

• You may be eligible for lawn mowing assistance under the NDIS if the service is directly related to your disability and considered a reasonable and necessary support. If eligible, you could discuss the need for lawn mowing to be included in your NDIS plan under the Core Supports – Assistance with Daily Life budget and to seek the supports through an NDIS approved lawn mowing service.

• Further information can be found on the NDIS eligibility portal: https://www.ndis.gov.au/applying-access-ndis/am-i-eligible

Submission 2108

If you require further assistance or have further queries, please reach out to Communities CCP Requests at CommunitiesCCPrequests@chde.qld.gov.au

The issues:

Are huge. I particularly got upset at calling it a “universal scheme”, bastardising the concept of universal design. The absolute f^&king ignorance that the NDIS only accepts a small portion of Australians with a disability. The state governments are living in a f^&king dreamland where NDIS takes away all the icky disabled costs and by taking that approach, they are abandoning us and ignoring our human rights. I have not replied to this because I don’t have the f^&king spoons. I share this so that there is a clear example of the complete lack of supports available under the QLD state government.

Discussions about community have been hard to read

Relevancy: You are planning to put more emphasis on what you call informal supports. Families. Friends. The problem is, there is a documented issue where disabled people get abandoned by their communities. And yet you want us to have a community to save you money. And you’re cutting the supports that might help us have a community. It’s almost like you are doing things utterly cluelessly.

A reasonable reaction to the rise of fascism has been to talk about community. I don’t disagree. On paper. The problem is, a lot of the discussions, like many leftist discussions, ignore disability.

The general discussion goes:

We need community to survive this! (Yes, I agree.)

We need to care for each other more! (Agreed.)

Everyone is selfish and community can’t have anyone be selfish, for any reason! (Hmm. I have to be “selfish” to maintain my health.)

Submission 2108

You have to give more than you get!

(But I can’t.)

Everyone who doesn’t give, can’t get.

(Way to exclude people who can’t give.)

You have to be uncomfortable to be in community.

(Being able to be uncomfortable is a privilege.)

The discussions may have slightly different words or phrases, but the above has been the general pattern. And I’ve struggled with it. I can’t give. I can’t drive a neighbour to the airport. I can’t give this or that or… well, basically the entire lists of things that people say you have to do to be in community, I can’t do. I spend more energy than I have, than is safe, to take care of myself and manage my health.

These discussions had bothered me for a long time, but the clarity on exactly what was bothering me came by a post on Threads.

A user (not someone I follow, just a post that the algo served to me) said:

The difference between networking and community: networking asks “What can this person do for me?”, community asks “What are we building together?”

My reply was:

Thank you for sharing this distinction; the more disabled I’ve become, the more uncomfortable I’ve become with discussions around community because it always seems to be “what can you give” and my ability to give is negligible many days.

I get what people are going for with the “give! give!” type of posts. They are trying to encourage people to give more. This isn’t bad, until it feels transactional. When it feels transactional, that’s when people who can’t give start to be excluded. I know they’re thinking of greedy capitalist types who only ever want to take. But you can’t design for that type. That type will never really be in community. Start thinking about more than just one type of person in your new community.